Sunday, May 30, 2010

Pure Happiness! That is all we need to get through Cardiology. She discovered that she can blow bubbles all by her self. And she succeeded too. Along with swallowing a few. Good thing they are non toxic!

Unfortunately, I had no more size three diapers and she needed to be changed. So luckily, I had a size one of Claire's. So we did what mom's do best and improvised. We managed to squeeze her into it.

This is after bath time. If you mention the word bath, she heads straight to the bathroom and will climb into the bath, clothes and all.

Lately I have been pulling out the camera and she knows exactly what to do. I get a "cheese" from her and several poses.

We had Ellie's cardiology visit last Wednesday. And the conclusion to that visit is that her heart is still improving!! Yeah! This is such a relief because it took seven months to start seeing any improvement. And in December, Dr. E said that she felt like a transplant was Ellie's best option but felt like she needed to be cancer free for at least a year before they would consider her for transplant. I feel very grateful for all the prayers and thoughts going our way because I feel that there has always been a higher power with Ellie. From day one the odds were against her. Dr. Buckman from Huntsman ran into my mom-in-law shortly after E was admitted last summer. (He was working with Dr. Park on her tumor.) She asked him if he had heard about her with the heart problem. He said that of course he had heard and that she was the buzz of the hospital. He said that it was so rare for a child to be faced with two non connected major things like that. I am so grateful that she is still with us today when the odds have been so against her. We have another heart appointment in July and then the dreaded MRI in August. Yuck!! That always comes around too quickly. I wish there was an easier way to look at the tumor. Somehow, we will take it a step at a time. Ellie is truly a living, breathing miracle. She and my other girls continue to amaze me everyday. I have really tried to end each day by saying to myself what special thing each one of them did or said. I love this quote that I found on another heart mom's blog...

"There are two ways to live your life - one is as though nothing is a miracle, the other is as though everything is a miracle ~ Albert Einstein"

Ellie's Angels

Grab Ellie's Race Button!

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"Sometimes the pattern of life seems monotonous and discouraging. It is like climbing a mountain and after reaching the top, getting knocked back down to the bottom to climb it again; but I guess the fun is in the climbing and not the arriving!"-Marjorie Pay Hinckley

Our Family

Nate, Becca, Macy, Adrie and Ellie

Ellie's Story

I am the author of this blog, my name is Becca and this is our story. My husband and I have four beautiful girls. Macy, Adrie, Eve (who was stillborn) and Ellie. Ellie is the reason for this blog. She was born with a neuroblastoma in her neck and a coarchtation of the aorta. She has congenital heart disease and severe cardiomyopathy due to a late diagnosis. We are hopeful of the outcome and wanted to share our journey with family and friends.I wanted to update her status as of January 2010. Ellie has physically done well despite her heart not seeing any improvement. We are still in limbo of whether she will need the transplant, but we are hoping to avoid that. The tumor was shrinking, but after the last scan appears to be slightly larger. We have a follow-up MRI in February, so wish us luck on that. She is one year old and talking and trying to stand on her own. She is such a joy to us and her sisters and keeps us all entertained.

Macy

Macy is such a bright personality. She loves to take care of her siblings and is the perfect non-rule breaker. She is such a good example to her little sisters and is very nurturing.

Adrie

Adrie is our spitfire and Is our drama queen of the family. But she is extremely tender hearted and is very observant of others and their feelings.

Eve

"Some people dream of angels, we held one in our arms."

Ellie Marie

This is Ellie! She is the reason behind this blog. She is the bravest strongest girl I know!!!

Claire

The baby of the family of all girls! She has been such a happy go lucky child. She keeps us laughing with her cute and fun personality!